Research needs patients.
It's that simple.
Low prevalence, scattered populations and no comprehensive registries make rare disease research difficult everywhere, and harder in South Africa. We hold the connection to the community that makes some of it possible.
How we work with researchers
The South African Rare Disease Patient Registry
A validated, POPIA-compliant registry capturing patient-reported data on rare conditions in South Africa. Data access is possible under appropriate governance and ethics approval.
Study recruitment
We can reach patients who have consented to be contacted about research relevant to their condition, including for clinical trials. For some conditions we may be the only realistic route to a South African cohort.
Patient and public involvement
Involving patients in study design rather than only as subjects. It improves recruitment and retention, it's increasingly expected by funders and ethics committees, and it produces better research.
Getting findings back to the community
Research that disappears into a journal helps nobody who took part. We help translate findings into something the community can actually use, and into the advocacy case for change.
How we think about data
​
The registry exists because patients trusted us with their information, and that trust is the asset. Access is granted under ethics approval and appropriate governance, data is de-identified, and patients control what is shared and whether they can be contacted.
We'd rather be slow and get this right than be easy to work with and lose the community's confidence.